Monday, September 9, 2013

So you missed the 2013 Inland Hope for Parkinson's Conference? Bad move. But it's OK, your faithful blogger was there and has these highlights

Taking it from the top... Steve Wright, head of the Northwest Parkinson's Foundation welcomed the crowd of over 300, and announced a new initiative the NWPF is getting underway called "PD link" which will line up people struggling with PD with mentors. The mentors will be volunteers with PD experience who are nearby and can encourage and give pointers on how to navigate in these tricky waters. Those in need of a mentor, and those who are willing to pitch in should get in touch with the Northwest Parkinson's Foundation.

Wright was followed by a panel on making your medications work. Leading off was Dr. Pinky Argawal, a Seattle-area movement disorders doctor. Dr, Argawal began with one of the themes of the day, the complexity of Parkinson's Disease. One of the most arresting statements of the conference was Dr. Argawal's comment that some non-movement symptoms of Parkinson's Disease show up 30 years before the disease begins to show such classic symptoms as tremor or slowness.

Dr. Argawal's metaphor for PD was the iceberg, with our motor problems as the visible tip, and the non-motor symptoms as the mass below water. Which, I guess, makes we People With Parkinson's the Titanic, only sinking with majestic slowness, rather than in a matter of hours.

Dr, Argawal went on to list a number of non-motor problems with Parkinson's, and suggested ways of coping. Among her list:

Depression, which can surface as many as four years before onset of motor symptoms. Pd usually responds well to standard depression meds.

Hallucinations, can be caused by any of the drugs that are used to treat PD, or not drug related at all. This means that the first place to start is tinkering with the medications you are presently on, seeing if their are some you can lower dosage of or eliminate, altogether. Dopamine agonists and levedopa are the prime suspects in hallucination problems.

Swallowing Problems and Drooling. Dr. Argawal is in the PD-patients-make-the-same-amount-of-saliva-as-anyone-else-they-just-don't-swallow-enough-camp (the other side says our malfunctioning autonomic systems make extra saliva which we then drool out.) Argawal's suggestions for this are 1.) try sucking on hard candy, which will remind you to swallow often 2.) chew gum (Which is also said to help with speech troubles) or 3.) Botox your salivary glands.

Short-term Memory Loss. There are drugs that can help with this, but Dr. Argawal stressed that it should first be established that PD is at fault and that it's not something else at work. She also mentioned that this could be a big problem for people in driving and suggested we test our skills with an online driving exam.

Anxiety Panic attacks can be brought on by meds wearing off. Tinker with dosages and frequency to avoid "off" states.Gastric Problems can be addressed by using patch-delivered medications, or the hoped-to-be-available-someday-soon inhaled form of levedopa. A non medicine-based strategy she suggested for gastric problems was to change to more-frequent-but-smaller meals.

Constipation suggestions included the usual, more fruits and veggies in the diet, drink more water, the option of stool-softeners, and using the bathroom when you are in an "on"state.

Sweating adjust medications, and wear cooler clothing were two suggestions.

REM Sleep Disorder this refers to the acting-out of dreams. Healthy people lose muscle tone during sleep, according to Dr. Argawal. Not people with Parkinson's Disease. Because we retain our muscle tone while sleeping we can activate them with untoward consequences, like falling out of bed or punching a bed mate. Treat with clonezepam, says Dr. A.

Obsessive Behavior this can be anything helplessly overdone in a way that causes harm, like too much gambling, sex, or shopping. Many PD medications aim at stimulating motion receptors, but other receptors, like those for pleasure may be stimulated as well. Logically treatment here is adjustment of dopaminergic meds, especially the dopamine agonists.

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Welcometo all with an interest in Parkinson's Disease. This blog was to be an information clearinghouse for the Anchorage Parkinson's Disease Support Group, where meeting schedules, agendas, speakers etc could be found. It's still that, but has also become a sort of therapeutic hobby. So I invite you to join in the discussion and experience a little therapy as well. This will be as interesting as we as a community make it. Think loud and sound off!

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Anchorage Parkinson's Disease Support Group

Our Support group meets the third Saturday of each month at 3:30 in the afternoon. The meetings take place at the Anchorage Pioneer Home , 923 West 11th Avenue in downtown Anchorage on the fifth floor in the West lounge. You may call 350-9691 with questions about the group and meetings.

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The Knight Digital Media Center, judges of the Alaska Press Club's annual journalism awards selected The Alaska Parkinson's Rag for second place in the "Best Blog" category for 2008. Here is an excerpt of their comments:

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